Why are we all so different?
Approximately 1 in every 200 children is born with a chromosome abnormality. When a child is diagnosed with a chromosome disorder, one question that will arise sooner or later is how to discuss the diagnosis with the child and with other people. Things are particularly complicated for sex chromosome trisomies, XYY and XXX (also known as triple X or trisomy X), where the range of outcomes is very wide. Most children attend mainstream school and some will go on to university, but risk of educational difficulties is relatively high. Many parents are unsure whether or how to tell their child about the trisomy.
With funding from the Nuffield Foundation, EP research group “Oxford Study of Children’s Communication Impairments” (OSCCI) headed by Professor Dorothy Bishop developed booklets to help parents confronted with this issue.
Their goal was to produce, for each condition, two booklets. The first one is for parents, and discusses the pros and cons of disclosing the diagnosis. The aim is to give information that will help parents balance different factors in coming to a decision.
For instance, many parents were concerned that if they disclosed the diagnosis, then this could lead to the child being stigmatised. On the other hand, the child might be relieved to have a diagnosis, particularly if it provided an explanation for developmental difficulties.
To help those parents who decide to disclose the diagnosis, OSCCI developed a picture book for each condition. This is suitable for children with a developmental level of around 6 to 10 years. It does not explain complex genetics, but focuses more on the idea that having an extra chromosome is just one way in which people can be different from one another. All the booklets can also be downloaded from here.